Well I have been to St T's and I have to say it was rather an anticlimax

I sat with the doctor who asked "well Lesley why did you want to come to this clinic?" I was immediately gob smacked and told her so - I told her I had hoped for answers as to how, this may effect my life now and maybe my life span - how it could be effecting my heart and lungs and of all things that has happened previously in my life - her response ...... " Well Lesley, as a rule APS only causes pregnancy problems and clots - you can't have more children (as I have gone through early menopause), she also said you are lucky your miscarriages happened in the first trimester most APS sufferers loose them later on..... (I wonder is the pain any less or more, whenever you lose a baby??) and are on warfarin so it shouldn't effect you anymore!!"

We spoke about my time in the wheelchair as a paraplegic 7+ years, and it seems that yes probably caused by APS, and although I have had PE's she maintains that my lung problems and shortness of breath and the AF mentioned above are not APS related but due to separate health issues. Apparently although I have had 2 positive APS tests where my Beta2 glycoprotein was above normal, but in her words only just - normal expected 0 - 6 and mine were 14 and 27 although I am sure my doc told me it was 60 something anyhow, back to the antibodies, apparently it is almost unheard of to have positive beta2 glycoprotien test without the other one ...ermmmm cardi something or other not being raised, yet mine is and was always normal. My fatigue is NOT APS she says, nor hair loss or brittle nails, the purple motteling of my skin is, but nothing to worry about, pins and needles in my back due to time in wheelchair not APS Eye sight problems may or may not be APS related

So...... she asked what I wanted???? what to say after what she had said to me, (which I kind of took as positive) - I asked her, what could she do for me that my lung specialist, cardiologist and hematologist are not - her answer?? NOTHING..... So she is repeating my beta2 glycoprotein, the cardi..... whatever it is, checking my live and kidneys (although to date they have been fine) checking me for lupus, my ESR and other inflammatory markers (total of 9 bottles blood taken) `- oh and point of interest, although my hematologist wants my INR to be 3 - 4 the doc at ST T's said she would be happy with 2 - 3

So .......

What can I say?

Smiles and wishes of good health to you all

Lesley

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41 Replies

Oh you poor thing, my appointment too was a terrible anticlimax... and I would ask you to check your thyroid profile, this is not for everyone, but it can affect us as part of these autoimmune spectrum. There seems to be very scanty care for APS and it depends very much on who you see. I felt very irritated that my obstetric history and other, was not taken out of archives... they had weeks to do it and I asked. I hope any other appointments are better than this.

Mary, I am not sure if my thyroid has been checked, although she did mention about it. Regarding my miscarriages, i was rather more hurt, that she considered miscarriage before 3 months and not much to worry about, whereas losing a baby further along is more to worry about, to me a baby is a baby... but I guess if she has not lost any herself she would not understand.

My next appointment is 1 May, to get the results of the blood tests. She said I didn't need anything else, as Hammersmith had been so comprehensive in their tests, which they were. Hammersmith were fanstastic, and it was them that thought of checking for APS.

I am sorry that the doctor was so uncompassionate about your miscarriages. Sometimes they think so clinically that human emotion is taken out of the big picture. I do understand your pain Lesley...and frustration.

Pity we couldn't clone Dr G Hughes and put him in every hospital in the country I was very lucky as 12 years ago 5 out of the 6 appointments I had were with him He is such a gentle guy treated everyone the same a perfect Gentleman I know how important this appointment was for you and I feel your pain and upset I am so sorry Lesley but hang in there x

I think we all have experienced bad experiences in docs & hospitals during Aps moments & some even before....I know I have, many a time I have felt like why do we struggle so much if a doc' we are under doesn't seem to care or understand?! but I have realised that if you dont get the answers you need or should be getting.....ask to change the doc' until you find one that you can trust....I know we shouldn't have to do that.....but I've certainly been one of those people that over my 41 years of life have had that struggle since the age of 13!!!!!

I hope you find the trust you deserve & keep strong, we are always here to talk to xx

Lesley I feel your pain. I have just come back from my appointment with my Rheumatologist who is supposed to be the expert in apls in this state and I got a very similar brush off to you plus she doesn't think I should be on warfarin! And I think she will probably sabotage what little progress I have made with my GP.

I don't know what to do. I don't think there is anyone else in this state I can go to

I am so frustrated I am in tears writing this but sending you a hug for that horrible and thoughtless comment from that dr about your precious babies.

My experiences at Tommies have been that i have only ever seen the Prof I am under on my first appointment. Thereafter it was a bit hit and miss who I saw for a while. There appear to be a lot of more junior doctors in the clinics lately and if you get one of them when they have just started that rotation then their APS knowledge is probably not going to be great. I now know two of the consultants who are right hand docs to the Prof and when I really need something sorting or someone to listen to me I make a point of saying I want to be seen by one of them when I arrive at the clinic for my appointment. The reception staff don't like it but tough! My health is to precious to me to be fobbed off by a new junior doctor and I'm learning to dig my heels in and push for things much more now. All that said you can't knock Tommies overall and I'm very pleased that I am able to go there.

My son was stillborn due to a blood clot in the placenta. I was nine months pregnant and he was 7llbs, 23 inches and perfect in every way. I am not trying to imply a miscarriage is not very very upsetting, but I do think to carry a baby for nine months and then have to go through labour knowing your baby has died is actually worse. I lost my son in 1987 and found out I had antibodies in 1988 when I was pregnant again. I was told not to get too excited but have half an asprin a day and hope for the best. Although I have had chronic migraine for over thirty years, for the most part I am ok. I read the posts on this site and realise there are many people who suffer much more than I have done. My mother also had four late miscarriages and my daughter who they thought had chronic fatigue also has the antibodies for Hughes, so I suspect this is hereditary. I realise to lose a baby at any time is a tragedy but I don't think the doctor was being deliberately insensitive, probably had seen the sadness of losing a baby just when you were expecting to bring him home.

I had a stillborn in 1984 at full term and the most horrible feeling, I was told that the placenta had been blocked by clot. Then in 1995 I had my daughter whom I took Heparin and she was born early, however she has what I have etc and then a year later had a little boy again who died due to anacephales. Despite it being awhile I still get down and then I was not aware of APS and all that. There is no way I go through with it again. Now my daughter has Lupus etc and just want her to get on with her life and get on top of it!!!

All experiences around any form of child loss is awful for the individual and attached family members, and some women go through this time and time again, these losses are very very hurtful and for some to have an explanation to why this has happened once or several times over bring some mild relief. My sister had a little comfort when I told here two years ago, what I had worked out. I remember as a teenage girl so clearly the dread which came with each pregnancy, before she carried her one and only son.

Whether an early or a late loss all hopes are dreams are shattered when they occur. I know that despite my 5 conditions, I am very very lucky, as because my own sister lost 7, and my other sister nearly did, their prior legacy of clots in legs and lungs... my natural suspicion and close proximity to St Thomas' is what saved mine and my babiy's lives.

For all of you brave woman on here, and partners, my heart goes out to you and I hope this site can support you all and your own personal history to date

I have had similar experiences with doctors. It feels hurtful and insulting as if you are there just to seek attention. My husband says they are either arrogant members of the health profession, or come across that way because they feel, themselves, uncomfortable that they don't have any good answers for you. Good to vent your frustration! Take care of yourself.

I feel so much for all of you that have told us of your loss of your beautiful babies.......I was one of the 'lucky' ones that had my 2 boys early in life......so may have just avoided the heartache you ladies had to endevour......my heart goes out to you all, you have touched my very soul & I feel for you all hugely............Keep yourselves strong & always push to get any answers you need to get on with this horrid Hughes, if I can help just 1 person not go through so much heartache with the awareness I keep trying to raise it will mean something, hugs to you all, Sue xxxx

yes mine are too! ones 19 & the other 23, 2 grandsons & another on the way in a weeks time!! .......keep strong & dont let them get you down, if you have to change docs' to make you have a better relation ship with your docs....do it, remember it's your life/your body/ your feelings, all the best, Sue xx

Sorry to hear that you had a bad experience at St T's, if you look through my blog posts you will see my thoughts on my visit there which I had in January, which were more or less the same as yours, despite seing one of the senior members of the team there.

In short I too had already tested positive for Anti B2 Glycoprotein twice (17 and 22) and had been very symptomatic for the last 3 years, and felt completely brushed off.

I did ask for a thyroid panel to be done as I also have symptoms that I believe are possibly caused by me being hypothyroid (I've asked my own GP for these but its PCT policy here not to test T3 and T4 with a "normal" TSH), when my results came through I saw that my TSH had been rerun (normal again) but no T3 or T4.

In the consultants letter to my GP (you will get a copy sent to you also) it was stated that it was worth investigating me further for APS (which is why I thought I was there in the first place), so maybe I will get somewhere with my next visit, something which I've seen echoed by many who have been to St T's.

Good luck to you and I hope your future visits are more constructive for you,

This is no excuse but I know the Unit at St Thomsas is going through a bit of a change at the moment and there seams to be a bit of a issue offer some peoples visits i will rasie this with Kate at HSF and see if there is anything HSF can do to just tell them that patients are feeding back issues and see if it is something HSF can do or not.

Hi Paddy, it is worrying for patients. I travel from East Yorkshire, as i requested to see Prof Hughes in 2005, as i had no confidence with specialist in my region. The service i received at St Thomas's was excellent compared to where i come from. I am a retired midwife, due to my conditions, and i have worked in a few trusts, so i can safely comment on my findings. Reading the above comments gives me concern, if patients are coming to St Thomas's Lupus unit, and coming away feeling let down, and that, what they have, is treated has trivial. Which it is far from the truth when you are a suffer. I have to say the last two visits have left me somewhat concerned. When Prof Hughes was there, you did feel at ease as he always seemed to listen to you, and understand. I am aware the junior doctors have too learn, but i worry they are not given enough input to APS, leaving some patients wondering why have they gone all that way to be given advice that suggests APS is a minor condition. Which it is not. My heart goes out to anyone who endures a pregnancy loss, no matter how many weeks the mother is. A loss is a loss, and you all have my heartfelt thoughts.

The doctor was wrong to make the comments she did about your miscarriage. But to be honest the doc has told you exactly what my doc told me. As long as you take your warfarin and stay in your target range what else can they do for you?? You sometimes have to try to forget you have this condition and get on with life without dwelling on it too much.

Thank you all for you fabulous support, care, feedback and friendship!!!

Paddy, spirits duly lifted

Millsy - you're right, and now I know that my breathing is not the APS - I am going to work really hard, at accepting the illness's I have, not to dwell, but be happy I am here to smile everyday.

To Andy, Sue, Haley, MaryF and everyone else, thank you thank you and thank you again. WE are all here, able to smile, share, love, life and happiness with our friends, family and loved ones, and we are luckier than some other people, we can do this, we will survive, every last one of us, and for today, I wish you all enough!! and send you a smile..... I will blog the story of wishing a friend or loved one enough!!

I would write to the Head of the unit, who I believe is David D'Cruz and explain your visit to him. I am sure he will understand and you may get answers to your question. If everyone who has issues writes this attitude will be clamped down on. We all have to wait an inordinate length of time for our visits and seek some sort of comfort from the visit.

I know they are extremely busy but that is no excuse for being unprofessional.

What is with all the comments you had. Mine were similar at my local hospital. I had a stroke in 2006 and they were investigating as I had lesions in my brain. When taking a medical history the neurologist commented on my three miscarriages asking, 'Why did they happen' as I had them in the 60's and the kindest comment at the time was 'Better luck next time' and possibly one of the cruellest was' Nature's way of getting rid of rubbish'. I could not tell him why I had had these miscarriages. At least today they do try to find out why they occur. The latest rheumatologist has decided that I might not have APS and seemed quite miffed that I had been diagnosed with it at all, for goodness sake did she think I had made it up!! until it was mentioned I had not even heard of it. The results were positive, I am on warfarin and I have most of the side effects of APS that the members of this blog have. We must continue to help each other, we know how we feel. This site has been a God send for me as I know I am not on my own. God Bless you all and yes, I hope we all have 'just enough'. My heart goes out to you Lesley. Love Mary H xxx

you people over there arnt alone , i think we all have our rough waters when it comes to our disorders- no matter where we are , we read this time and time again. with the support ok all your friends lets hope you get thru this tough time and move on to better results you are seeking. i guess even st, t has its glitches. be strong and dont let it get you down, as we are with you --------jet

Hi, I believe, Dr M Cuadrado. is senior to the department, and although she wasn't rude, or even offhand, I had hoped for..... well errrmm maybe compassion is what I was looking for - and well I don't know, but because I have had extensive tests to find out what was wrong with me - even though the tests didn't get there, right till the end of all of them ..... and God knows Hammersmith were fantastic doing every test you can imagine - It was if, well you have had all these tests, why are you here? - And there was me thinking ....OK I have this fairly new diagnosis of APS - what next? and that is how she was with me....

I`m so sorry you had such a lack of compassion, and very sorry for your losses and pain.

I had a totally different experience with the same doctor, she was thoughtful, kind and compassionate,

I had quite a few miscarriages on my journey to have my children. Along the way I too have been subjected to the comments `better luck next time` and `oooh there must have been something wrong with it`.So I do understand your pain, any loss is devastating, to us they are our babies whether the loss is early or late in pregnancy,

Said doctor prescribed the Plaquenil and vit D, she was first doctor to notice vit D deficiency. She also sorted things when my own Gp was being obstructive about the Plaquenil.

I have to admit my first visit to St T`s I felt let down, different doctor though, I was expecting answers and explanations and came away none the wiser. Cos they didn`t have the answers at the time.

I would write and explain how upset you are, I have in the past written to a consultant at another hospital when something went wrong and got a lovely, apology and details of how procedures would be changed so the same mistake didn`t happen again.

i have read some of the negative comments on here about st.thomas clinic and felt i had to contribute.. Im very pleased to say my experience has been totally different. Im 36 and five years ago i had multiple clots on my lungs and a stroke,before this i had only ever had an under active thyroid which had caused me no real problems. i then went on to have a clots in my legs and varies other places. I suffered all sorts of symptoms and was made to feel like a hypocondriac by my local hospital and gp. I had kidney problems, constant joint pain, eye problem, poor memory, hair loss to name a few.. When i was finally referred to Dr david D'cruz after a fight with my local doctor after my first vist i finally felt that someone actually understood!! I live in wales but they kept me in hospital for a week and did loads of tests and scans, i couldnt of asked for better treatment.. Its now 2 years since ive been travelling up there every 3 months and my condition has never been better. the medication is review and changed if need be regularly and he and the other doctors i have been seen by there have all always made me feel looked after, and actually explain why things happen and effects etc.. Rather than looking at me like im an alien like most doctors do (either that or they ask me what they should give me!!) So anyone who is being refered to st. thomas don't be put off nearly everyone i have spoken to while i am there is very pleased with the care!! it's just a shame for you people that didn't feel the same and i hope you too get sorted soon x x

Saffy, you are right in many ways, no one should be put off from going to St Toms, it was through this site I decided to ask for referral, and the fact my first visit wasn't great, by no means, means to say it is not a good hospital or good care won't/can't be had. It was my first, and I am hoping my next will be better. But and here is the but I am also lucky to have found supportive specialists for the problems APS has caused me - ie cardiologist, Lung specialist, hematologist and finally my GP since my DX - So peops on here, we may have bad days at clinics, but that doesn't mean the clinic is bad

Hang in there Lesley. I too have experienced these things here in the US. I have considered not returning to a hospital that I have been going to for 26 years because of two separate issues with two different doctors. I did file a grievance against the last doctor. We expect to be treated with compassion and dignity and that doesnt always happen. I think all doctors should have to take classes in bedside manner!!!!! I have decided to continue on with the same hospital despite these two bad experiences. Continuity of care is so important and after 26 years I would literally be starting over with this battle.